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Do I HAVE to take Letrozole??

EmilyA_BCN
Member

Re: Do I HAVE to take Letrozole??

Hi Bellas Mum,

 

It's Emily here from Breast Cancer Care.

 

A few of our telephone volunteers had some severe side effects from letrozole and decided to change their hormone treatments.

 

If you'd like to chat to someone about this, feel free to call us on 0345 077 1893 (Mon-Fri, 9-5pm). A staff member will have a chat to you first to talk through what you're experiencing, so that we can match you with a volunteer who's had similar side effects and put you in touch.

 

Best wishes
Emily at Breast Cancer Care

Bellas Mum
Member

Re: Do I HAVE to take Letrozole??

Thanks Ali

 

i am due another batch soon so will ask the pharmacist if I can try another brand. Am used to achy knees as have osteoarthritis anyway but the pain is keeping me awake. Will give the Onc a call on Tuesday to see what they say. I feel like I have aged 20 years and am 55 now but feel 75!  It's reassuring to hear that the symptoms do pass and will definitely try another brand

 

thank you x

Ali49
Member

Re: Do I HAVE to take Letrozole??

Hi Bellas Mum. I know exactly how you are feeling as i was just like you when i stsrted letrozole. 2 weeks in i could hardly walk with knee pain and i felt so low. I was going to stop but phoned and got an appointment for my oncogist. She asked me to persevere as she said the side effects wod settle as my body got used to tbe drug. I am happy to say they have.

I am now 9 weeks in. I still have achy knees but i am trying to do my 10000 steps a day and the exercise is helping. I am no longer feeling down and feel like I am starting to feel like me again. I am 51 and fi ished chemo on w4th Jan and had masectomy on 19th Feb.

Another thing to consider is the brand that you have. I am taking Accord brand as this seems to be the one that most people find causes least side effects. I ask my pharmacist to order it in for me.

I know we are all different and cope in different ways but i hope this horrible time passes quickly for you xx
ann-m
Community Champion

Re: Do I HAVE to take Letrozole??

Just to add, being the right weight & physical activity also seems to be where it’s at as well. x

 

ann-m
Community Champion

Re: Do I HAVE to take Letrozole??

Hi Bella,

No one can railroad you into anything, but it is good to talk things through with your onc. I have found my onc & surgeon very easy to talk to about this. I decided to stay on tamoxifen rather than go onto anastrozole as originally recommended, as I’ve been fine on it & both the onc & surgeon are happy with this. I did read some research that, in my situation, that although anastrozole was technically better, the difference in outcomes between the 2 was fairly negligible. Also, having one parent with osteoporosis of the spine, I like that tamoxifen is protective of bones in post menopausal women. 

Predict is useful, however, it only looks at survival rates, not those living with recurrance within & beyond 5 & 10 years. I have read that hormone treatment can reduce the recurrance risk by up to 50% overall.

Loads of best wishes with it, you will decide what’s best for you.

ann x

Bellas Mum
Member

Re: Do I HAVE to take Letrozole??

Hi ladies

 

thanks for replying. I checked using NHS Predict and it was something like 97/100 surviving 5-10 years with no treatment other than surgery and rads with the options I put in. The tablets are really making me feel shocking and whilst I am off work that's just manageable but looking longer term and going back to work I know that I will struggle. At the moment every day is like trying to wade knee deep in mud. 

 

Best option at the moment is to talk to the Oncologist but I feel that I may be railroaded into taking them and don't want to live a lie by saying I am when am not.

 

i have looked at natural methods I.e altering diet and also losing weight ( that would be a bonus!)

Chick1
Member

Re: Do I HAVE to take Letrozole??

Hello

 

As Sue says, it is best discussed with mediacal staff and take it from there.  Perhaps you might want to give it a bit longer to see if things settle or try another one of aromatase inhibitors or tamoxifen. Letrazole is most definitely not only used for people with advanced breast cancer. 

 

 No one directly forces us to take any treatment, so in answer to your direct question, no you don't have to take Letrozole.  In the end it really is up to you whether you swallow your daily pill based on what is important to you and how it affects your quality of life.

 

However, Oncology staff may be able to help you make an informed decision around recurrence/future risk.  It may be worth findng out whether your cancer was highly hormone positive or not.  You may want to check out the Predict Scores to see how hormone therapy may benefit someone in your position.

 

I take Anastrazole and have been on it for nearly a year. I also had no lymph node involvement.  My hormone receptor status was 8 (so high). I am post menapausal so no oestrogen production from the ovaries.  However, even after menapause or ovary removal,  we still produce testosterone/androgens in our adrenal glands and aromatase will convert that to oestrogen.  The aromatase inhibitors, such as Letrazole, will prevent that conversion taking place and hence less post menapausal oestrogen being produced in the first place.  With Tamoxifen, the conversion still takes place but the drug binds to circulating oestrogen and prevents the oestrogen from reaching it's destination (I am sure someone else can give a much better scientific explanation!!!)

 

 I have some side effects but can manage these at the moment quite well.  I have decided should my head hair start falling out then that will be the time to reconsider!!  We all have our individual breaking points.

 

I hope you reach a decision that you are happy with,

 

Best Wishes to you and take care x

DebbyA
Member

Re: Do I HAVE to take Letrozole??

I had full hysterectomy 14 years ago with ovaries removed. Had oncology appointment last week and was told that there would not be any real benefit from taking tablets for 5 years. I had 18mms lump removed and clear lymph nodes, I am 57 so I wondered if it was my age? I was concerned as looking on sites there did not appear to be anyone who had radiotherapy but did not have to take tablets.

Sue C
Community Champion

Re: Do I HAVE to take Letrozole??

Hi

This is a question really only your oncologist can answer. It sounds like you are really struggling on letrozole, so I would suggest to go back and ask them if there is an alternative. There are other oestrogen inhibitors they can try.

Any side effects that I have experienced tend to be short lived, however, there is no getting away from the fact that I do get achy joints and fatigue. Personally, I was told not to stop and I will perserve. I have been taking them for nearly 2 years now ( only 8 to go....oh joy! ) had lumpectomy, chemo and rads. No lymph node involvement, but grade 3, hence all the treatment.

Hope this helps xx

Bellas Mum
Member

Do I HAVE to take Letrozole??

Hi All

 

been on Letrozole for 3 weeks and am feeling awful, whole body aches, terrible brain fog, feel really low, tired and lost all energy - moaning here but feel a complete mess. My cancer was very small and classed as low-intermediate risk, no lymph node involvement. Had Hysterectomy 5 years ago along with ovaries removed so not a lot of Oestrogen in my body at all as not had any sweats for years.

 

I am putting it out there as to whether I really need to take the meds. Happy to have the Rads but the side effects and subsequant risks of Letrozole make me really question if its worth it. I just feel that I am part of a plan where "this is what all women have so you will have it". I also saw an article on Letrozole only being used for advanced BC which is something I dont have.

 

Any advice/hints/tips and wise words please??